Rowan’s joy shines through adversity

By Darren Lum

Published June 27, 2017

A few months have passed since six-year-old Rowan Pettinella was admitted to the Hospital for Sick Children in Toronto for seizures.

It has been a tough road to this point for the Stuart Baker Elementary School student left with permanent brain damage from the seizures. The challenges will continue for the rest of his life and for his parents Karen Pettinella and Jane Isbister.

He was moved from critical care to Holland Bloorview Kids Rehabilitation Hospital in Toronto in May for therapy. He requires a wheelchair, cannot speak, has some hemiperisis (right-sided weakness) and was diagnosed with the genetic disorder, Sotos Syndrome.

Rowan has faced adversity ever since he was born from life-threatening medical complications, followed by developmental delays and complications such as a seizure disorder and issues with his heart, hearing, vision and his mobility.

Isbister sent an email on Thursday, June 22, to concerned friends, including the Echo. Here are excerpts from the message about the latest news:

“Everything is new or adapted; every child here is thriving through such huge challenges; the contrast between amazing and heartbreaking is in every moment of every day. Unless you’re Rowan, I think. He is the epitome of resilient and persevering. He is finding happiness in lots of ways.”

Although it’s taken five weeks, Rowan is behaving more like himself at Bloorview, she said.

“He is himself and getting reacquainted with his body and brain and how it all works. When he’s happy and his joy is shining through he sounds like a mini Chewbacca. Every morning when I come in he sits up in his tent bed (The Vail 1000 canopy model from 1983 – you can google that for a visual), sometimes he even gets on his knees (crazy that he can do this at all), and gets his Chewy on. Big smile. Loud sound. Huge joy! And he’s finding ways to share and engage this spirit with teachers, visitors, and therapists throughout the day.”

“The progress has included communication using yes and no cards. His right arm and hand are starting to ‘work,’ he has begun to walk with assistance during therapy. Despite enormous gains regarding eating, talking and walking, Rowan is not close to being able to eat, talk or walk on his own.

“Such simple things we mostly take for granted and yet they are so complex,” she said.

A 12-hour day includes close to five hours for eating, taking vitals and managing and receiving medication.

“They are quiet hours. But hours that are not typical, require huge care and attention, and don’t look like a six-year-old’s day should,” she said.

Isbister said the short- and long-term outlook is becoming clearer.

“And with that there is more lightness, more ability, more laughter (you’ve got to laugh), more achievement ... and some bigger sense of reality setting in too,” she said.

The reality of the situation is inescapable.

Rowan has worked very hard, she said, but requires a communication device and faces unknowns involving eating/feeding.

“Oftentimes those hits of reality come with a huge pang in my heart. I’d really like to hear Rowan talk again; I’d really like him to never have another seizure; I’d really like to not worry about his ability to self-regulate or his executive function/control. And that’s his path,” she said.

Before Rowan can come home to the Highlands, his parents’ homes will require modifications necessary with his wheelchair and other requirements.

Isbister said Rowan has been tentatively scheduled to be discharged on Aug. 17.

“Between his genetics and this brain injury he will need support through childhood, adolescence, and likely beyond. The next two months at Bloorview is about a transition home and keeping him engaged and motivated until we’re back in Haliburton ... And then we start establishing and living the new norms again ... but this time with a bit more space, privacy, familiarity, and a community that I know is so keen to see him and for him to be back at school in September,” she said.

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